Real life

stories

“My son Ryder was diagnosed with Hypoplastic Left Heart Syndrome at my 12-week antenatal ultrasound. I don’t know why, but I went to my appointment that day with a feeling things weren’t right.

The word to describe what I felt when I was told my baby was going to be born with a severe and complex heart defect, was gut-wrenching. I was beyond devastated.

I was offered termination up until 36 weeks and then palliative care when he was born, as his chances of survival were slim to none. But I was determined that my son was going to be a fighter and I continued with my pregnancy.

I cherished every movement, every ultrasound and every day of my pregnancy, and prayed that he would make it. I didn’t care if I only got a minute, an hour or a day with him, all I wanted was for him to know how loved he was.

The day Ryder was born, the room was filled with about 20 doctors and nurses who were ready to move him to the Royal Children’s Hospital. Ryder had his first open heart surgery at 48 hours old. After this, everyone knew he was meant to be here. We had a fighter!

Ryder had the doctors amazed at how well he did and he was discharged to Ronald McDonald House at 19 days old. He had his second surgery at four months old and at five months old he was discharged. We were sent back home to NSW after we’d relocated to Melbourne when I was 38 weeks pregnant. It was an amazing feeling!

Ryder is now two and he’s thriving! He’s such an amazing kid. His big Brother Levi adores him and his little sister Adelyn admires him. I couldn’t imagine my life without him.

Although a tough journey and rough start to life, I wouldn’t change our story for the world. It’s made us really appreciate the little things in life and to value every opportunity you’re given.

Ryder still has a long way to go. He’ll need a third surgery when he’s five. He has good days and bad days, but he’s a tough kid.

Watching your child go through something like an open heart bypass surgery is definitely the hardest thing I’ve ever had to do. Not a day goes by where I don’t wish I could take his place.

There is no answer for how long he will be here but I’m determined to make sure he has the best life possible! He has the best personality and the biggest heart out of anyone I’ve ever met – even if he was born with only half a heart.

“I stood there and watched my mum pass away and I thought ‘wow I have that disease too’.

I’d been fighting cardiomyopathy for 16 years before I needed a transplant urgently. I’ve had three or four episodes of cardiac arrests, I’ve had three defibrillators and my last brand new defibrillator didn’t even last a full year before I went into heart failure! That’s when I needed the transplant.

One day my doctor simply said “you’re in the final stage of heart failure”. I was in such a shock. My fiancé Simon had only just come into my life and I kept thinking “why did this amazing man walk into my life, only for me to have to leave him.” It doesn’t make sense. It didn’t make sense; it still doesn’t make sense…

My time was up and I wasn’t done living yet. I still can’t get my head around it. To hear those words, that I was dying and quite rapidly, it was terrifying. It was a pain I couldn’t take away from my family. And I didn’t want my brother to have to bury his mum and his sister to this awful disease.

So we started the paperwork for the transplant waiting list. I had dental exams, bone scans, skin tests. Then a doctor came in and we had a very real conversation about organ donation. He asked me “Why do you deserve this gift?”… And I couldn’t answer him. Because why does anyone think they deserve to be here?! I said I lead a very simple life. I’ve never had many dreams or goals or ambitions with work, but nothing makes me happier than Sundays… watching all the kids in my family play. My brother always makes spag bol for everyone and we sit around and listen to music and laugh and everything is good. And I don’t want to miss that. And the doctor said that was reason enough.

On the night of my transplant there was a lady who also went into the operating theatre. Simon met her husband in the waiting room and they started talking. He said his wife Liz was having a lung transplant… Liz and I are the same blood type. We don’t know for sure but we’ve put the puzzle pieces together and I’m convinced we had the same donor.

One day after surgery Liz and I were talking and my sister-in-law suddenly burst into tears and said “You guys haven’t skipped a beat, you’re finishing each other’s sentences, it’s like you’ve known each other your whole life and you only met a week ago.”

We even had the same weird food cravings. I said “I can’t stop drinking milk. I just can’t get enough of it. And Liz said “Me either! And I hated milk two weeks ago! Now I just want to drink two litres of it!”

My sickness didn’t disappear after the transplant. My kidneys went, I had the highest level of rejection and they discovered an arrhythmia. But I guess they’re things I had to go through to be here today, to survive. A lot of people think, when you’re given a new heart you don’t have any more problems. Unfortunately it’s not true. Once you fix one problem, it often leads to something else…

Laying in a hospital bed that I thought I would never leave, I questioned everything that was happening to me, my body and most of all my heart.

I was only a week post heart transplant and I couldn’t stop the tears or my grief. I was grieving a complete stranger that had given me the greatest gift of all. I wanted to comfort their family and let them know that my parents would have found them and will look after them until we all met on the other side. I wanted to know where and how and most of all why. I wanted to know everything about my heart, our heart, and I knew I may never receive these answers.

I knew then that I had two options. I could let this grief and questions of why consume me, or I could get up and fight and live. I knew I would never have a significant life that people will talk about in generations to come, but I could make this life, my life with our heart one that they could be proud of. I knew that I would never have the details about my donor’s hopes, loves, goals, dreams and desires, so I thought I would create my own for them, for us, for our heart and I would develop a bucket list, our bucket list….” – Melissa.

“My biggest fear is dropping dead on the train on my way to work, alone and not with my family.

I have heart disease and although I get regular check-ups and look after myself, having a sudden heart attack is always in the back of my mind.

My grandfather died of a heart attack at Tokyo airport on his first overseas trip. My father died of a heart attack at 57... This year I’m turning 57 and I’m more anxious than ever. I’ve realised that my dad wasn’t that old and there’s a lot he missed out on seeing.

I’ve also had a couple of uncles who have passed away from heart failure and cousins who have had stents put in. So it really runs in my family and it’s taken some important people in my life.

Because of my family history of heart disease, I always had an annual stress test. About six year ago, there were some abnormal results and my cardiologist wanted to do more tests. I asked him ‘what is the ultimate way to check this’ and he said to go straight to an angiogram. The week I waited for the angiogram appointment was difficult.

Every pain, every twitch, every feeling... you freak out! You worry about whether you’re going to drop dead or how you’ll react if you do have a heart attack.

The angiogram revealed I had a 95% blockage in my artery. It was not a good result, but I was relieved because they caught it in time and I wasn’t just being paranoid.

I had a stent put in and continue to get tested every year. I take care of myself but my heart disease is mostly genetic. So a lot of it is out of my control. Before the stent, I’d had stress tests every year and this blockage was never picked up. It had to reach that point! I keep thinking, what if I don’t make it to the next appointment before it reaches 100%? It’s a concern I have all the time.

I’m not ready to go. I want to meet my grandkids and watch them grow up. I want to make sure everyone’s happy and settled especially my wife and daughter. They’re the two most important girls in my life! I’ll do everything I can to make sure this happens.

But I also know heart disease doesn’t let you say goodbye,” - Kiran.

You can help families struggling with heart disease by supporting vital discoveries at the Victor Chang Cardiac Research Institute.